Guest guest Posted November 3, 2003 Report Share Posted November 3, 2003 Best wishes for that trip you will be heading out on soon. take care 7 We will pray all goes well & you all come home same day:) LOVE & HUGS, grandmoMBEV clinic visit tomorrow Hi all. Just wanted to let you know that has a regular clinic visit tomorrow in Birmingham. To me she is doing maybe a little better than the last time we were in clinic. She asked if we needed to pack a bag and I said not this time. Watch us be 4 hours from home with no bags and told to stay. Oh well. It won't be the first time. I really don't think we will stay but you never know. Just wanted to say hi and let you know about the visit. Have a great day all. Sue Pettit mom to (16 wocf) driving and being the most responsible 16 yo I have ever seen, (13 wocf) playing football, band, and whatever else he can get into, and (11 wcf) into all sports, running full speed doing all she can and still doing great---diagnosed at 8 days of age at LeBonheur Childrens Medical Center in Memphis, Tennessee, now seeing Doctor Lyrene (and other wonderful folks of course) at UAB Children's Hospital ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Thank you so much. Apparently your prayers (and others as well) worked. We are back home as of 7 p.m. tonight. We had an excellent clinic visit. PFT's were 70-80 range, which is her norm now. She hadn't gained any weight (boohoohoo) but has grown a little over 2 inches taller in the last 3 months. Oh well, I guess maintaining weight and growing taller is okay. Anyway, the exciting news... is going back in December after her 12th birthday, to be evaluated for GENE THERAPY. We are so excited. The lady we talked to, Eubanks, said you have to have mild CF and as of right now, qualifies for having only a mild case. That sounds so much better than the " a little worse than mild " we heard about 6 months ago. Anyway, we really want to be a part of this study. Hopefully this will lead to a cure. Plus, is excited about them paying her to come to the doctor. The study will do all of us good in the future, plus will be followed very closely by Dr. Clancy who is a pro at CF care and that will be very good for her I think. Anyway, thanks again for your kind words. Once again, we are getting ready for another round of basketball season. is very excited about playing again this year. I am looking forward to yelling for her. Talk to you again soon. Take care and have a great day. Sue Pettit mom to (16 wocf) driving and being the most responsible 16 yo I have ever seen, (13 wocf) playing football, band, and whatever else he can get into, and (11 wcf) into all sports, running full speed doing all she can and still doing great---diagnosed at 8 days of age at LeBonheur Childrens Medical Center in Memphis, Tennessee, now seeing Doctor Lyrene (and other wonderful folks of course) at UAB Children's Hospital Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 I sure will keep everyone posted. I hope it works out well for all of us. HAVE A GREAT DAY!!!!! Sue Pettit mom to (16 wocf) driving and being the most responsible 16 yo I have ever seen, (13 wocf) playing football, band, and whatever else he can get into, and (11 wcf) into all sports, running full speed doing all she can and still doing great---diagnosed at 8 days of age at LeBonheur Childrens Medical Center in Memphis, Tennessee, now seeing Doctor Lyrene (and other wonderful folks of course) at UAB Children's Hospital Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 4, 2003 Report Share Posted November 4, 2003 Please keep us posted on the clinical trial. This is very exciting and I would really like to know your thoughts along the way. Yeah !!! Our children and grandchildren thank her! Gale > > Thank you so much. Apparently your prayers (and others as well) worked. We > are back home as of 7 p.m. tonight. We had an excellent clinic visit. PFT's > were 70-80 range, which is her norm now. She hadn't gained any weight > (boohoohoo) but has grown a little over 2 inches taller in the last 3 months. Oh > well, I guess maintaining weight and growing taller is okay. Anyway, the exciting > news... is going back in December after her 12th birthday, to be > evaluated for GENE THERAPY. We are so excited. The lady we talked to, > Eubanks, said you have to have mild CF and as of right now, qualifies > for having only a mild case. That sounds so much better than the " a little > worse than mild " we heard about 6 months ago. Anyway, we really want to be a part > of this study. Hopefully this will lead to a cure. Plus, is excited > about them paying her to come to the doctor. The study will do all of us > good in the future, plus will be followed very closely by Dr. Clancy who > is a pro at CF care and that will be very good for her I think. > Anyway, thanks again for your kind words. Once again, we are getting ready > for another round of basketball season. is very excited about playing > again this year. I am looking forward to yelling for her. > Talk to you again soon. Take care and have a great day. > > Sue Pettit > mom to (16 wocf) driving and being the most responsible 16 yo I have > ever seen, (13 wocf) playing football, band, and whatever else he can > get into, and (11 wcf) into all sports, running full speed doing all > she can and still doing great---diagnosed at 8 days of age at LeBonheur > Childrens Medical Center in Memphis, Tennessee, now seeing Doctor Lyrene (and other > wonderful folks of course) at UAB Children's Hospital Quote Link to comment Share on other sites More sharing options...
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